Not Over It. Not Ever.

It was nearly a month ago now.

A month ago since that night when I was told that I was not fit to be a friend, and that said friend would not allow me to be around them or their son.  A month ago since I cried until I was retching, texted frantic apologies to everyone I knew for existing, seriously contemplated turning myself into the police, hurt myself until I bruised and bled and finally doubled my emergency anxiety medication so I didn’t end up in the hospital.

A month ago.  So short, yet so long ago.

“Are you over it?” a friend asks.

What a stupid question.  What a simple question.  It happened, it is past, it is over.  I should be over it, this I know. I have talked it over with Naia-the-new-therapist, I have talked it over with friends, with my mother.  I have deleted all evidence of our nine-year relationship, thrown out the pictures, the invitations, erased their presence from my social media.  I have scrubbed myself clean, realized that I did not commit any crimes, only a slightly-more-awful-than-usual social gaffe, and have allowed myself to be have conversations with children again.

But am I over it?  No.  I am not.  And I probably never will be.

I am still trying to tell people what happened.  I am still unable to do so without crying.  I belong to a religion that does not believe in sin, yet I cannot help going over and over and over my behavior, berating myself, physically beating myself for a crime that I honestly did not know I was committing at the time.  Sometimes I think that this is why Catholics have kept up the tradition of confession.  Five minutes in a booth, ten minutes on your knees at the altar, and whoosh, your slate is wiped clean, your soul is unsullied, washed over like the cold ocean tide coming in to erase any evidence of footprints.

My autistic brain replays the day and the deed over and over.  What could I have done differently?  What should I have done?  What should I have known?  Was it a mistake to reach out in friendship at all?  If I had only stayed in my house that day then nothing would have happened.  How stupid am I – stupid, stupid, stupid – to believe that I can be around people and not hurt them?  I obviously did hurt them.  I hurt people.  I should be in jail.  Isn’t that where people who hurt others go?

“You didn’t hurt them,” Naia says, over and over and over.  “You offended them.  There is a difference.”

I know, intellectually, that she is right. I threw no knives, I fired no gun, I crashed no car.  Yet my behavior and my words hurt them, much as their behavior and their words hurt me.  I think that I must deserve this.  I think that I must punish myself.  Maybe if I punish myself enough, then I will not make the same mistake in the future?  Maybe if I give myself one more scar, I will remember to just shut up?  Maybe if I just do this, try that, try harder, then my social mistakes will be over and I will stop offending and alienating people.

But I cannot try harder than I am trying now.  I cannot try harder than I tried on that day.  And I cannot forget, or get over, what happened for a long, long time.

Thirty years ago I interrupted a teacher in preschool and was sent to a time out in the hall.  The hall was long, dark and scary.  I sat and I cried and I cried.  The teacher’s name was Susan.  She knew that all preschoolers cried when they got in trouble.  She didn’t know that I still haven’t forgiven myself for interrupting her three decades later.

Fourth grade – being late to school.  Sixth grade – a flippant remark.  Eighth grade – offending someone.  Each of these incidents is scarred in my brain.  They are wired just as firmly as the titanium rod that holds my friend Penny’s spine together.  They will not go away.

Each is a reminder that I cannot trust myself, and I cannot trust other people.  Yet it sets off a war inside myself, for I am naturally trusting, naturally friendly.  It is only the fact that I’m terrified of hurting others that people ever think I am reserved or shy.  The only reason I stutter sometimes isn’t because I can’t find the words, but because I am afraid that the words will be the wrong ones.  That these words will lose me, again, friends and relationships that I value.

I love deeply and fiercely.  I hug people so hard that they hurt.  I try to keep in touch with people, to show them that they are valuable to me.  Because of my disability, I require more help than most people.  I am always conscious of this, always looking for ways that I can be less of a burden, more of a help.  I bake, I drive, I do what I can.  But sometimes it feels like I live my life as an apology for existing.  I want to live an authentic, autistic, enthusiastic life, yet it has been ground into me from before I could talk that my way of existing is not how other people exist.  That most of the time, I am wrong.  That most of the time, I should just. Shut. Up.

Which really……isn’t…….me…….at ………all.

I cannot live and be happy and be quiet all the time.  I love to talk, love to connect, love to give speeches and presentations and answer questions and help people to understand things.  I love to learn, my logical brain seeking an answer to everything.  I love to laugh, and pet dogs, and snuggle babies.  I love to advocate and hike and do crafts and sing.  It’s taken me over three decades but I have finally decided that most of the time, I do love living.

But no life comes without pain.  And my life, it seems, is sometimes cursed because it is precisely in doing what I love most – connecting with people – that I occasionally hurt them.  I meet strangers and they are speaking Serbian and I am speaking Hindi but neither of us notice and so I stick to my Hindi cultural mores and express things in my Hindi way and I don’t know that I’ve just called them a nasty word in Serbian, because to me the word means something completely different.  I was talking about panthers and they were talking about ducks.  We were in the same theater but watching completely different plays.  Only the characters all look the same to me, so how was I supposed to know?  How do I generalize a life’s worth of social skills training, formal and informal, so that I stop making mistakes?  I can’t.  I can either give up on living completely or accept that sometimes, I will hurt people.  At some time, I will probably hurt you.

And sometimes if I’m lucky, sometimes people will give me the chance to explain. Years ago at a beach house, my friend Lizzie was walking around in her bikini all day.  I kept imploring her to change into clothes.  After a few hours of this, she took me aside.  She wanted to know if I was offended by how she looked in her bikini.  What?  I was aghast.  No!  I was concerned, because she had been swimming, and my doctor had recently told me that you could get a nasty infection from staying in your wet bathing suit after swimming.  I didn’t want her to get sick.  I took my doctor’s words as law.  I had absolutely no opinion of how she looked, only that she stayed healthy.  Oh, Lizzie said.  I won’t get sick.  You can stop worrying.  But it was nice of you to be concerned about me.  She could forgive me for my comments.  She could give me a chance to explain.

Unfortunately, many times,  people will not give me a chance to explain.  Another friend at church was on the committee that asked members to be on various committees.  I ventured to him that I might volunteer for X.  He explained that he would never nominate me for any committee because I had made too many social errors, that people didn’t always like me, that I sometimes said the wrong thing.  I accepted this, and thought it over.  I thought, this is true.  He is right.  I don’t want to make any trouble.  I don’t want to cause people to have to work more because, after all, understanding and communicating with me does take some work sometimes. Since he said that, years ago, I have never volunteered for a single committee no matter how many times people have asked the general congregation to do so.  I have done single tasks alone but that is all.  I am still, to this day, too afraid to be a part of my church fully because of this one person’s words.

This fall, I was seriously considering venturing out of my shell more.  Now that I’ve qualified for social security (long story some other time) I have more free time.  I thought about being on a committee or two.  My brain, always slow to process human interaction, thought that perhaps I had something to offer, that perhaps that friend didn’t know me that well, that perhaps I could contribute something of value. And then a message came from someone that I loved, whose son I loved.  A message telling me that I am not only unworthy of their respect, but that I am unsafe, evil, all the bad things that ever existed in the world.

Then the tears, and the blood, and the pain that seems to radiate from my fecked-up brain and body.

It has only been a month.

No, I am not over it yet.

It will impact my behavior and thoughts for years to come.  It will be the niggling seed of doubt long after this friend has forgotten what exactly I did.  I will never forget.  I will never stop replaying that scene.  Some people’s memories change over time.  Mine don’t.  In my memories, I am always in the wrong, and I am always deserving of people’s wrath.  It’s another neural pathway cementing my PTSD, it’s another thing that I cannot forgive myself for.  Definitely not now, maybe not ever.

I’m not okay.  I never was, I never will be.  So if I don’t seem to relax around you, if I seem tense or unhappy, it is not due to you, it is due to me.  Long experience has shown me that I cannot trust people because sooner or later, I will hurt them, I will hurt you, and that is truly the very last thing I ever want to do.

If the road to forgiveness starts with myself, then that is a path I doubt I will ever set eyes, much less walk, upon.

 

 

 

 

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Abilities Expo Review

Have you ever heard of the Abilities Expo?  Have you ever wanted to go to one?

Abilities Expo ™ bills itself as ‘Inspirational, Unforgettable and Coming Your Way.’ It goes on to explain that ‘Abilities Expo is about bringing necessary products and services together under one roof for the community of people with disabilities, their families, caregivers, seniors, and healthcare professionals.  It’s about introducing opportunities that can enrich your life….especially ones that you never knew were out there.’  Abilities Expo happens all over the United States in places such as LA, Chicago, DC, Houston, and Boston, as well as in Toronto, Canada.  It has been going on for nearly 40 years, and, granted, I was not alive 40 years ago, but I am alive now and it was being held in my city so I went down to check it out.  After all, it said ‘disabilities’, and I’m disabled, and I’m a member of the disability community.  Therefore, Abilities Expo should be for me……right?

As it turns out, not so much.

Abilities Expo, I have learned in this and in the past few years, is not actually for everyone in the disability community.  It is for a very small subset of the disability community: white wheelchair users with money.  (I say white because, despite the diversity of my city and the disability community, I saw very few POC there, and very few POC in their printed advertised materials.) Although I am white, I am not a wheelchair user and like most people with disabilities, I live below the poverty line.

However, it should be noted here, Abilities Expo is free.  FREE!  Hey, can’t pass that up.  All you had to do was register, answer some mildly-invasive personal questions (what is your disability? Gender? Age?) and get a plastic bracelet slapped on you before you entered. Although I did pre-register, I hate those bracelets – I always tear them to bits in hospitals – the line was long to check in and I didn’t feel like waiting and so my friend, Rae, and I bypassed the registration and just walked in – and found that nobody was checking the stupid bracelets anyway.

We walked down the first aisle, which had non profits on it.   There were not nearly as many in previous years, and those that were there were places with significant endowments.  Although I was unable to find out the rate to rent a booth from their website, a friend who used to exhibit there has told me that the cost, even for non-profits, is incredibly expensive, and you cannot possibly have the simplest exhibit for the three days for under $1000 dollars.  Considering that they charge for things such as trash baskets and each individual folding chair, I am not surprised.  So the real grass-roots organizations run by actual disabled people are not represented.  This is very sad, as it is these organizations which are the heart of the disability community and deserve to be treated as such.

One thing that I always dislike is a hard sell.  If I am going to spend money I am going to spend it wisely.  I plan out my purchases, do research and always see if I can buy used first.  Like the vast majority of PWD, I live on an extremely limited income.  However, you would not know this by going to the Expo! In fact, their exhibitor webpage proudly touts the fact that the aggregate income of PWD in the US is over $1 trillion.  That is a number so big I literally cannot conceive of it.  However, I’m a great browser, and I was happy to browse some things and dream, until the sales pitches began to get more and more aggressive.  At least twice, I had to flat-out tell people, “I live on a very limited income and this product is nice but there is no way I will ever possibly be able to afford it.”  You would think that a company dealing with disabled people would know this?  Apparently not.

One thing I did like was what I call the trick-or-treating aspect.  You are given a reusable bag and you – okay, I – go around to all the booths with candy and get a piece.  It’s exactly like trick or treating!  The bonus is that if you forgot a snack and can’t pay for the overpriced junk at the concession stand, you can have candy instead.  Luckily, I’ve been to the Expo before so came prepared with water and snacks.

The water is important, because unless you are a wheelchair user there are not that many places to sit.  Since the booths have to pay to rent each individual chair, there are few chairs available among the exhibitor booths and if you want to talk to an exhibitor you have to stand there.  My back was aching before we had gone all the way through.  There is a large area with tables and chairs as well as a sort of staging area, but these were removed from the space with the booths. 

One thing that made me sad as a non-wheelchair user was that there were various workshops and events going on throughout the day, but few of them applied to me. The main events included wheelchair skateboarding, wheelchair dancing, and power soccer.  Although I appreciate that they were trying to showcase that people in wheelchairs can do physical activities and sports, it did ring faintly of the idea of the super-crip, the superhero who happens to use a wheelchair but who doesn’t let that stop him from doing anything.  I know many people who use wheelchairs and the fact is, sometimes they do stop you from doing things, just as my autism stops me from doing things.  I dislike the idea that a quiet, sedentary life cannot be equally as fulfilling as one where people do flips and tricks in customized, flashy sports chairs.

The workshops, no matter their subject matter, were all inaccessible to me.  This is because they took place in a roped-off corner of the enormous exhibition hall, and despite the fact that they had CART, you were essentially still surrounded by the Expo.  I honestly do not know how people paid attention to the slides and voices of the presenters when there was so much going on around them.  Maybe you had to be really, really interested in the subject?  All I know is that I wasn’t.  The workshops on the day I went included things about wheelchair travel, horse therapy, and a new kind of physical therapy.  On other days, medical marijuana, emergency preparedness for people with disabilities, and sleep issues were discussed.  A number of the workshops were put on by people who wanted you to buy their product, service or therapy, although, since I did not actually go to any, I cannot comment on how strong their pitch was.

Of the floor space at the Expo, at least two-thirds of it was taken up by huge, shiny vans, fancy wheelchair ramps, new-fangled hoyer lifts, and bicycles for every person which probably cost more than most disabled people make in a year.  The huge wheelchair conglomerates like Permobil and Braunability both had enormous displays.  There were new vans with new lifts, new seating options, new everything.  They had professionals in matching shirts trying to sell people on the idea that if they just bought this product, everything would be better.

 There was a great exhibit by a nationally-known nonprofit, Easter Seals, on adaptive products and toys, some of which you could borrow through a lending library that they have, but other than that, there was very little you could access without having money.  I mean, if I didn’t hate boats I might love to go on an accessible cruise, but the fact is that vacations are out of reach for the majority of disabled people.  Abilities Expo isn’t showcasing abilities at all; it is showcasing things that the average disabled person cannot ever dream of affording.

As Rae said, looking at the bicycles, “I really want to try one, but it would just make me sad that I couldn’t afford it.”  This, to me, was the crux of the problem with the Expo.  It is not meant for your average disabled person.  It is meant for a white, wealthy person in a wheelchair – and considering that there were two booths with new kinds of penile catheters and no women-specific booths at all, I suspect it is meant for men.  And hey, what do you know: in the hierarchy of disability, white, cis, male wheelchair users are at the top.  They are the ones leading many disability organizations.  They are the ones in power.  POC, GLBTQ, people with mental illnesses and developmental disabilities – we are just not on the radar for this kind of thing, because when Americans think of disabled people, they think of Christopher Reeve.  They don’t think of me, or others with invisible disabilities.  The very lack of seating at the Expo brought this point home quite strongly.

So – Abilities Expo is coming to your area.  Is it worth going?  Well, if you have a kid in a wheelchair, I would say yes.  This is because there are a *lot* of people on wheels there and it is a great chance to expose your kid to the idea that people like them grow up, have families, live and work in the community.  There are also lots of other kids in wheelchairs, which can be wonderful if your kid doesn’t have any wheeling friends.  The majority of adults in wheelchairs were happy to talk to kids and their parents and serve as role models.

I also think it is worth going if you use a wheelchair yourself or are going with a friend or family member who does.  Some of the products, unattainable as they may be, are pretty darn cool, and there is nothing wrong with dreaming. But if you have an invisible disability?  If you don’t know anyone else who is going?  Save your spoons and skip it.  The Expo is not made for you or me.

 

Car Scam Guy Vs. Logical Autistic Brain

                There are certain characteristics which I possess which, although I might like to think they are inherent to me, are in reality inherent to my autism.  They are attributes which I use to make up for my deficits in other areas. But until recently, I never realized how my deficits could also be attributes.  I never realized that meltdowns could be an advantage.  I never realized that sometimes, being weird and not following social norms could not just be a negative – they can be a positive, too.

                Life is weird.  Here’s what happened.

                I went grocery shopping.  I have yet to visit a Trader Joe’s with an adequate parking lot and this one is no exception, but I like their stores and there are certain products there, like olive oil, that I would never dream of buying anywhere else.  I very carefully slid my car into a spot, noting that the car to the left of me had parked an inch or two over the yellow line, intruding on my space.  I mentally grumbled about stupid parkers and opened my door very carefully.  I sucked in my stomach and reached awkwardly to get my purse, very careful to not touch the other car.  I can recall this because I have an autistic memory and that memory is really good.

                Fifteen or twenty minutes later, I was done with my errands and returned to my car.  However, this time, a man stood between my car and the car to the left. 

                “You damaged my car!”  he said. 

                “No, I didn’t.”  I replied. 

                “Yes, you did!”

                I peered closely to where he was pointing.  I saw nothing, not a scratch or a dent or a pockmark.  I recalled getting out of the car and how careful I was.  I began to get very, very confused, and meanwhile, Car Guy was raising his voice and saying how he needed my information, how his car cost X amount, how it was freshly painted that day, it was brand new, just picked up, I owed him money, I owed him this and that.  I began to panic.  I thought about points on my license and the $500 deductible I have which I had no way of paying and my insurance going up.  I thought about going to court and maybe jail. 

                My autistic brain and soul roared loudly in the face of this injustice.  I knew I had not hit his car.  Why did he keep saying I had?  In my logical, orderly world, people do not accuse others of doing things that they did not do.  But maybe I just wasn’t seeing the dent he swore was there.  I knew I was clumsy, maybe I had damaged his car. 

                In the face of his anger, I was terrified.  What did he want from me?  I didn’t know and I couldn’t figure it out.  Car Guy was not following any social script that I had ever learned.  So I did what most white people do when confronted with such a situation: I called 911.  I retreated to the store and retrieved the manager, who came outside and stood with me as we waited. 

                I should mention here that Car Guy was black.  I’m not sure of any other characteristics except that he was male and black, and from the moment that I dialed for the police I was absolutely positive that I had signed his death warrant.  Because if I have learned anything from the Black Lives Matter movement, it is that cops kill black people for no reason, even in small, ultra- liberal cities such as the one I live in.

                The Trader Joe’s employees were very nice.  They waited with me for the few minutes until the cops arrived.  By this time I was in full meltdown mode.  I was crying hard, flapping, and biting myself because I did not understand why I was being accused of doing something that I was 100% positive I did not do.  Did you go to jail for dinging a car?  Would the police shoot first and ask later?  How could I afford to replace his brand new car anyway?

                The police, as it turned out, drew no weapons.  They did repeatedly ask me if I needed to go to the hospital and I said no, I had high-functioning autism* and I was having a meltdown, not a heart attack.  I managed to retrieve my insurance information and license, and Car Guy and I exchanged information.  The cop peered at Car Guy’s door.  The cop admitted that there could possibly be some sort of mark there, and encouraged me to take a picture or two.  I did.  I called a church friend who lived nearby and she was on her way over, as I knew there was no way I could deal with this situation by myself.  I was still crying hard and beginning to have trouble breathing.

                “I didn’t do it!”  I kept saying.  Because I didn’t.

                Car Guy was clearly sick of this whole thing.  He took the piece of paper with my information on it, tore it up with the effect of tearing up a death sentence, and said, “I can’t stand how you’re crying.  You’re crying too much.  I’ll forget it, okay?”

                A few minute later, he had gotten in his car and gone, and my friend arrived.  The cops asked again if I wanted to go to the hospital.  Again I said no.  The cop explained very calmly that nothing was going to happen now, it was all over, and he hinted at something I did not understand.  He said that there was no way I could have hit his car where he said I did with my car door, because the angles did not match up.

                The cops left.  It was starting to rain.  I sat in my friend’s car and cried.  What had I done wrong?  Why was I accused of doing something I had not done?

                It was then that my friend explained to me what the police had been hinting at.  It was, apparently, a known scam.  Someone parks over the line, then accuses the stranger of damaging their car.  Since most insurances have high deductibles, Car Scam Guy assumes that the person will just want to get home and will offer the guy cash to make the problem go away.  Car Scam Guy wasn’t after putting me in jail.  He didn’t want insurance information or to know my name or where I lived.  He wanted an easy $20 or $50.  He thought that he could easily intimidate a plain-looking woman who was probably eager to get home at the end of the day.

                Of course, Car Scam Guy had no way of knowing that I was autistic.  He had no way of knowing that my brain and my body would go haywire at being accused of a crime that I did not commit.  He didn’t know that with my memory I could recall getting out of my car, and that my logic demands evidence and proof of wrongdoing.  He also didn’t expect my meltdown to be as severe as it was or as long.  I called for help, and help came, because I knew that I could not deal with the situation on my own.  When he saw that I clearly had advocates on my side, like my friend and the Trader Joe’s employees, he backed down. 

                I threw him off his script.  He knew that he had no evidence, that he would lose in court, in insurance, in whatever.  He knew this – but I didn’t.  I only knew that I was terrified and certain that I had done no wrong. 

                My friend said that in general, I should not call the police on black people, because it can be dangerous.  But this situation was different.  Car Guy was directly confronting me.  He was unfairly asserting that I had committed a crime (I actually don’t know if scratching someone’s car is a crime.  In my mind it is.) I had few resources at my disposal, and was losing my ability to communicate clearly.  Under the circumstances, I did the okay thing.  Under the circumstances, it all worked out okay. There is no Peace 911.  There is only an Emergency 911. 

                In the end, when the Logical, Emotional Autistic met the Scammer, the Scammer lost, not due to lack of effort on his part, but because I did not know the standard script for dealing with this type of situation.  My meltdown, something of which I have always been terribly ashamed of, ended up working in my favor because Car Guy did not expect me to be so emotional or to keep on being so emotional.  He had no idea that he had rocked my foundation of justice and goodwill in other people.  He just knew that I was weird, I was not giving him what he wanted, and I had people on my side.  So he fled, probably the best thing he could have done.

                Thinking it over, his story from the beginning did not make sense.  It had been pouring, vomiting even, buckets of rain for most of the day.  Who gets their car painted on such a day?  And who gets their car painted on the day they pick it up from the dealer?  And the price he was quoting me – $27,000 – seemed rather low for a brand new car.  My used car was over half that.  Logically, he didn’t make sense.  Logically, I should have known it was a scam.  But equally logically, it never occurred to me that it was.

                In the end, my memory, sense of justice and logic, and my meltdown equaled him giving up his scam.  My autistic self, the part of myself that I freely admit I dislike the most, saved the day. I do not know if Car Guy will try the scam again, but I am willing to say that if he does, he might choose his targets more carefully.  I am very, very glad that the incident did not escalate into violence, but I still have no idea what to do the next time I have a public crisis with a person of color.

                I cannot imagine living without autism, because it is in every cell of my body and brain and it makes me who I am.  Until this incident, I thought it made me a lesser, or at the very most an equal, person.  Now, I see that it may indeed mean something more.  It means that I am less resistant to other’s scams, that my logical brain and excellent memory can and will save the day, that even meltdowns have their uses sometimes.

                Now, if you’ll excuse me.  My logical brain may have done some great things, but it still won’t solve the problem of my cleaning my room.

 

*As a rule in my advocacy work I do not use the terms high and low functioning, as I believe that they are largely meaningless and take away from the shared sense of community.  However, I have found that there are 2 groups where I need to make an exception to this rule: when dealing with police and when dealing with doctors.  It makes communication much easier because it ensures that they see me as a competent person having a hard time, and also lets them know that I am my own legal guardian, medical decision maker, etc.

No one puts their children in a boat/unless the water is safer than the land

 

Despite it being a holiday, my local neighborhood pool was open today.  Because of the holiday, it was very nearly empty.  I was one of just three people in the vast expanse of crystal clear-blue water.  I lay on my back and looked up at the sky, for once empty of the airplanes that usually roar overhead, and I thought about the fact that it’s summer here.  And it must be summer in Syria.  And somewhere in Syria, there must be a swimming pool.  And sometime, somewhere in Syria, some other summer, some other woman must have laid on her back in the water and looked up at the same sky I was looking at.  The same oxygen and hydrogen and nitrogen and whatever else is in air – they made up the air she breathed. 

                Our planet is very nearly a closed system.   Sure, we send people and things up to space, and occasionally asteroids come down, but from my (very, very rudimentary) understanding of ecology and history, I know that the water in my faucet could have been drunk by an ancient homo erectus, somewhere on the African savanna.  I know that the sand I walk on could have been rocks a few eons ago.  That mammoths once roamed places we now name Manitoba, Saskatchewan, China, and Russia.  That the time of the dinosaurs is really just a blink away.

                Three-hundred-something years ago, people formed a country I now call mine, and even before it was formed, the leaders were deciding who had the right to live here, and who didn’t.  The Indigenous people whose language lingers in so many place names, even as most people today don’t know a single Native American Indian, they were the first to be deemed unacceptable.  They were rounded up, herded like cows to the slaughterhouse, killed by diseases that Europeans deliberately infected them with and which they had no immunity to.

                From the beginning, ours has been a nation made up of minorities – Spanish explorers, Chinese railroad workers, Jews fleeing pogroms, Irish fleeing famine, slaves and other people of color brought here against their will.  I think that maybe the founders realized this, and that is why they institutionalized racism just about as fast as they could, so that they could remain on the very top.  You name a group, white cis able bodied Christian men in this country have oppressed said group.  Women, people of color, disabled people, indigenous people, non-Christians, queer people, trans people  – none are truly free or equal to people like my brother and many of my friends are today. 

                This is not to say that my brother or my friends are not good, honest, hardworking people who deserve good things to happen to them.  It is just to say that due to their demographic, they have probably had it easier than anyone who doesn’t fall into a minority category.  It is just to say that it is this demographic currently running the country.  And it is this demographic that is repeating history, when you’d think we’d have learned from, oh, a few world wars and numerous genocides that happened right in front of our eyes in the last hundred years alone.

                Warsan Shire, a Somali-British poet, writes:

“no one leaves home unless
home is the mouth of a shark
you only run for the border
when you see the whole city running as well

your neighbours running faster than you
breath bloody in their throats
the boy you went to school with
who kissed you dizzy behind the old tin factory
is holding a gun bigger than his body
you only leave home
when home won’t let you stay.”

                There are people now fleeing their homes all over the world.  They are not fleeing homes made of camels and tents and desert sand.  They are fleeing modern cities with supermarkets and pharmacies and swimming pools.  They are fleeing the schools where they learned to read and the playground where their baby sat in a swing and laughed.  They are fleeing yards with trees where they once had picnics, surrounded by friends and family.  They most likely have no idea where the majority of those friends and family are now, unless their bones lie in a grave or at the bottom of the sea.

                But the park is a pile of rubble and the school has been closed for lack of teachers and the hospital closed for lack of supplies and there are great craters where the houses of their neighbors once were.  The peach and fig trees which once scented the air are cracked by the fires.  There are bullet holes in the storefronts.  They cannot just pack up and go to their sister’s in New Jersey because New Jersey is also in the midst of a war and the road is impassable, anyway.  A car drive that once took five hours is now as far away as the moon. 

                And since they can’t get to New Jersey – because New Jersey has no doctors, either, no teachers, no food – they decide that they will go then to the moon.  And they get on a boat or a train or a truck and they set off for the moon, and they never dreamed that the moon would refuse them.  After all, the moon has so much space, so much wealth. 

                The people in power right now – they think that the Syrian refugees and Iraqi and Afghani and South Americans who are all clamoring at our door, they think that they want the moon.  But they don’t.  They don’t want the moon.  They just want to live without the perpetual threat of their children being killed by bombs on the way to school.  They want to make plans with their brother about what to do about dinner, not what to do if he is kidnapped.  They want to fill their lungs with air and breathe out and sit under a tree somewhere and eat a peach.

                Do Syrian refugees not deserve peaches?  Do billionaires deserve tax breaks more than a child deserves an education?  If Jesus is truly who they worship, you would not value oil over a human life.  If Jesus was here now, he would welcome all refugees and he would know that Islam is a peaceful religion, and they are all our brethren, not our enemies.

                How can we call ourselves the land of the free when so many are not?  How can we call our people brave when they are not brave enough to reach out a hand to a stranger in need, to say hello, to say welcome?  It is all the same planet.  Country boundaries are arbitrary.  We are all citizens of the world, and it is about damn time that the federal government started acting like it.

The rest of Warsan Shire’s poem, ‘Home’ can be found below. I urge you to read and share it.

no one leaves home unless home chases you
fire under feet
hot blood in your belly
it’s not something you ever thought of doing
until the blade burnt threats into
your neck
and even then you carried the anthem under
your breath
only tearing up your passport in an airport toilets
sobbing as each mouthful of paper
made it clear that you wouldn’t be going back.

you have to understand,
that no one puts their children in a boat
unless the water is safer than the land
no one burns their palms
under trains
beneath carriages
no one spends days and nights in the stomach of a truck
feeding on newspaper unless the miles travelled 
means something more than journey.
no one crawls under fences
no one wants to be beaten
pitied

no one chooses refugee camps
or strip searches where your
body is left aching
or prison,
because prison is safer
than a city of fire
and one prison guard
in the night
is better than a truckload
of men who look like your father
no one could take it
no one could stomach it
no one skin would be tough enough

the
go home blacks
refugees
dirty immigrants
asylum seekers
sucking our country dry
niggers with their hands out
they smell strange
savage
messed up their country and now they want
to mess ours up
how do the words
the dirty looks
roll off your backs
maybe because the blow is softer
than a limb torn off

or the words are more tender
than fourteen men between 
your legs
or the insults are easier 
to swallow
than rubble
than bone
than your child body
in pieces.
i want to go home,
but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home told you 
to quicken your legs
leave your clothes behind
crawl through the desert
wade through the oceans
drown
save
be hunger
beg
forget pride
your survival is more important

no one leaves home until home is a sweaty voice in your ear
saying-
leave,
run away from me now
i dont know what i’ve become
but i know that anywhere
is safer than here.

Threenager

The news is depressing as hell.

Disabled people are literally asking politicians to not kill us and the politicians are asking why.

Nobody in my house is as clean as I would like them to be, including me.

My wonderful neighborhood pool has pipe problems and is delayed in its opening, and it is so humid you could cut the air with a knife.

And the entire country may be blown up by north korea, you know, any minute now.

So I slog on.  My back hurts.  My head hurts.  Everything hurts and there’s not much to do about it.

I look for jobs in my field to no avail, and in the meantime, in my part-time job, the world’s most adorable toddler has turned into a part-time demon.

I’m told it’s called being a Threenager.

Here are some verses I wrote about it.  I hope you enjoy.

 

I am a 3. I disagree.

I am a 3. I disagree.

 

I won’t get in my carseat

And then I won’t get out

I won’t ever be quiet

‘til it’s time to scream and shout

 

I’m a threenager, a teenager,

Who’s only 3 feet tall

Climbing tables chairs and railings

I know you’ll catch me if I fall

 

I vow I will stay naked

Until it’s time to take a bath

Then it must be time for snowsuits

And I don’t know why you laugh

 

I am capable and clever

Profound as a philosopher

But I lie on the floor screaming

‘cause I can’t eat the cat’s fur!

 

I’ve got the whole world’s future in the palm of my hand,

I’m trying hard to get it but I just don’t’ understand.

These grownups they just keep me down and keep me confined

They act as if I do not know my very own mind!

 

I’m doing acrobatics while I’m eating at the table

You say ‘please put your toys away’ but I don’t think I’m able

I hear it’s time to wash my hands but I’m too busy playing

I hear it’s time to go to sleep – I don’t know what you’re saying!

 

I kind of know my letters and most of my numbers too

I’m pretty sure my name contains an X, a Y, a Q

And though I may not know everything, it’s certainly more than you…………

Because I’m 3. And I disagree.

 

(note: this is actually a song and above mentioned three year old is in love with it and is now calling herself a threenager. but I can’t write music or explain and I’m pretty sure I borrowed the tune from five or six different places. I encourage you to make up your own tune and sing it to the toddler in your life.)

A Future I Didn’t Know Existed

In my state, it is not uncommon to see small, oval plaques on houses declaring that this house was built in 1790, or 1850, and that so-and-so lived here or did this then.  As I pass these plaques, driving my automatic car with heat and light and listening to a podcast, I sometimes think about how someone once peered out those windows of wavy glass to see horses and dusty roads and flora and fauna long gone from this region, and about the fact that the future I live in now was completely unimaginable to them.  I think of them as living so long ago, but it was really the blink of an eye.  Because just as strange as a car would seem to someone from 1825, so my daily life now includes technology and people that I wouldn’t recognize as a teenager.

When you don’t know something exists, when you don’t know that the possibility of something exists, then it is unimaginable and unattainable.  When you learn of the existence of a community that values you for you, you realize that nothing is impossible at all.

But for a long, long time – I didn’t know this.

You see………..

 

When I was growing up, we had nearby neighbors who were roommates.  At least, that’s what my parents told me.  Rosemary and Linda were roommates, who lived together (presumably in separate bedrooms) and mowed the lawn and gave out Halloween candy and had a friendly, black-and-white dog named Lucy who often escaped to play with our dog as a puppy.  At some point in my early twenties, however, it occurred to me that Rosemary and Linda weren’t roommates at all.

“They’re gay, aren’t they?”  I asked my mother.

“Yes,” she said, but she couldn’t explain exactly why she and my father had decided to make up the roommate story.  They just……thought it would make things…..easier.  To not have to explain.

In middle school, I was introduced to Ms. Nurey, who was openly gay at a time – the mid nineteen-nineties – when that was slowly becoming socially acceptable.  I remember looking at her and thinking that she didn’t teach any differently or look any differently from anybody else, and that confused me.  I wasn’t exactly sure what ‘gay’ was, other than that you didn’t date men.  Nobody explained to me that you could not only date women, you could fall in love with, have relationships and families, with other women.

It never came up.  I didn’t ask.  And since I didn’t ask, nobody answered.

I have a half-dozen cousins a decade or two older than I am.  Between them and a few of my parents friends, I knew what a wedding was: a church hall or a country club, the bride in a white dress, the groom in a dark suit, myself in scratchy taffeta or lace, panicked and hungry and inevitably dissociating the night away.  Nobody ever said to me, ‘you can live together without being married’ or ‘you can be married without having children’ or even, ‘you can marry someone non-white’ – because with one exception, (so remarkable to me as a teenager that I got in trouble for pointing it out) there wasn’t a single person of color at any of those weddings I went to. Nobody ever even said, ‘you don’t have to go to all these stupid weddings that you are incredibly miserable at’.*

Getting married to a white person of the opposite gender was right there in the solid line every single person in my world followed: college, career, a few relationships, a serious one, a wedding, kids.  At some point, you move from the city to the suburbs and buy a house.  These were not just goals; they were literally the only ideas about life that I was exposed to.  Yes, I knew single women, my mother included, but the divorce inevitably happened only after all the aforementioned stuff.

I knew of gay adults, but I didn’t know any myself.  In the same way, I knew of disabled people, I read books and watched television, but the only disabled person I knew was the kid with Down syndrome who I always envied for his ease with social pragmatics.  I certainly didn’t know any disabled adults.  I mean, they must have existed, but where did they live?  In their own, special suburb, maybe?

I’ve been thinking about these things lately because of a picture I saw on facebook of someone I grew up with, at a wedding shower with six other girls I recognized from grade school.  Although I’ve only snapshots to confirm it, most of them appear to have followed the path that our lily-white, wealthy suburban upbringing prepared us for.  I recognize them because they look the same as they did in high school; their brightly-colored, seasonally-appropriate dresses fall at the same length, they are all thin, all wear just the right amount of makeup, no visible tattoos, heels, and stand straight to smile with good teeth at the camera.  With few exceptions, I have rarely seen anyone I grew up with since graduation day.  We spent 12 years together, but at the end of the 12 years, because of my faceblindness, I still didn’t know everyone’s names, in my class of under two hundred kids.

The people that I hang out with today don’t look anything like my high school classmates.  I was at a party yesterday and people talked and ate and played games and told the children to please, don’t climb the bookcases, and within the ten or fourteen people there were at least three genders, multiple ethnicities and languages, skin from blue to black to actual-white-like-they-have-albinism-white, varying ways of being queer, varying sizes of service and seeing eye dogs, varying abilities to think and laugh and understand.  Nobody asked for any accommodation because accommodating strangers is as easy as accommodating friends, which is, as natural as breathing.  I admired someone’s full arm-length tattoo of sea creatures and listened to a mom describe why she and her wife chose a nature preschool for their daughter.  I accepted that skin color of the kid had nothing to do with skin color of the parent.

Every time I’m with these people, I fall in love, over and over again.  Not with the individuals but with the collective whole, the people who gather around and debate the merits of the special Olympics and German pronouns. I have a slightly different set of friends who, though lacking the outward diversity of the first set, are people I feel that I grew to be an adult with, people who I celebrate holidays with, whose kids climb on my lap unasked and uninvited and whisper in my ear, “unicorns and dragons”.  (I threw this kid a baby shower, how is she able to read?) Both groups – though there is definitely overlap between the two – know to ask before hugging or touching someone, know to label allergens, to wait for me as I stutter through sentences when words aren’t coming out.  They get the hilarity and the heartbreak of my daily struggles, and even as they commiserate with me over my latest doctor visit, they laugh with me when I grasp for a metaphor and come up with “the worth of your body!”

I don’t know if this community existed when I graduated from high school.  I do know that had I known it existed, it would have given me a hell of a lot more hope, because even then I knew that I didn’t fit the mold, that I wouldn’t ever be walking down an aisle in a long white dress.  I hated the prom but wasn’t smart enough to fit in with the true geeks and nerds in their AP classes.  In a place where raw intelligence was valued very highly, my learning disabilities were never mentioned in the context of adulthood.  I guess I thought that they would disappear with my (terrible, awful, seriously bad) IEP.

I remember in college being exposed to my first adults with disabilities, and the revelation I felt when I realized, “These are my people.”  Over and over, at community events, non-profit meetings, holiday parties, the adult disability world welcomed me and each time I felt awe as they drew me in.  It was the same way when I found Unitarian Univeralism.  Here were people who didn’t fit the mold: here were people like me.

“I have found my people!” I remember writing somewhere.  My people, as it turned out, didn’t look like my high school classmates.  My people were fat and bone-thin, used wheelchairs, crutches, Braille and seeing eye dogs.  My people were patient beyond belief, had a dark sense of humor, dated half a dozen people at a time, one person at a time, nobody and were content.  My people had biological and adopted and foster kids and cats that got more attention than any and all of the human kids combined.  My people are almost universally liberal, are often atheists, and nearly all of them enjoy a good chocolate cake that I’m more than happy to provide.  My people, in short, are amazing.  And being with them, just by extension, makes me feel amazing too.

A few years ago, I was not invited to my ten-year high school reunion, despite being not that hard to find.  I realized later that because of its location, at a crowded, noisy bar, I wouldn’t have been able to go, anyway.  And besides, what was the point?  What do I have to show for my years since high school? A few useless degrees, a lot of diagnoses, a body that is much bigger, a sense of humor that is darker?  I don’t have a real job, a real career, a real anything.  Those kids, whose middle-school clique I would have killed to be in, probably barely remember me, anyway.

Here’s the thing, though.  I have an autistic memory.  And due to that memory, I can remember every slight, every hurt feeling, every class I failed.  The people I grew up with?  They can’t do that.  They can’t look back at the years and rewind the videotape.  They have sepia-toned glass plates of memory, if they remember me at all.  And just as I am sure they see me in sepia, so I see them now.  They must all have their share of troubles and trials and challenges, but they don’t show up on facebook.  I must remember to have compassion for the people they have grown into now, if I expect anyone to have equal compassion for me.

I just wish……….I just wish that somewhere, somewhere along the road somebody took me aside and said, “you know what? You don’t have to………….” Which brings me to this essay.  Which brings me to now.

The whole ‘it gets better’ trope seems a bit odd to me, because I think that the idea of what ‘better’ is seems to be a narrowly defined concept.  I’m actually much worse off, medically, than I was just a few years ago.  I don’t know if my teenage self would have defined my life now as ‘better’ because I don’t meet any of her defined parameters of success.  Also, I’m still disabled – I never overcame it like they did in all the books – and I’m pretty sure 18 year old me would see that as failure.

So maybe what I’d like to tell my younger self is that life may not get better, but it does get different.  And there are so many, many, many ways to live life that you cannot imagine because you have never been exposed to anything because you’re in high school!  Sure, books taught me the best way to Narnia, but the best way to find a home was never mentioned.  And anyway, life isn’t about places, life isn’t about circumstances, life is about people.  It’s about different people living different lives in different ways.  It’s about jumping and trusting these people will catch you.  It’s about going to the edge, peering over, and seeing someone in the dark abyss handing you a flashlight.

I don’t know anything.  I don’t know if the world will end tomorrow in nuclear war, if healthcare will be gutted and my friends will die, if the seas will rise and drown the sidewalks I slowly, slowly amble down.  I only know that there is more than one road, more than two roads.  There are endless numbers of different roads, and I will choose the one where my people wait.  They are using their forearm crutches decorated in rainbow flags, they are wearing dresses with skulls printed on them, they have beards the color of their cute skirts, they are like nobody I ever imagined growing up.

And best of all?  They are mine.

 

 

*for the record, I still hate weddings.  They are too loud, too crowded, and too confusing.  I spend the entire time hungry because of my food aversions and the cake is inevitably too sweet, over-dry, and much worse than something I could bake myself

The Learning Winter

This has been a hard winter.  It hasn’t been a long winter, time has been passing as it usually does, somehow getting faster with every birthday.  But it has been hard.  I am trying to reframe this in my mind as a Learning Winter, but honestly, some of the things I’ve learned? I could’ve done without.

Most of January was taken up with preparing for my back surgery, having my back surgery, and recovering from my back surgery.  The surgery went well – initially.  They sent me home (well, to my mother’s) on opioids that afternoon, after learning that I come out of anesthesia very violently. (This is apparently a common thing among autistic people. Who knew? More people should know this.) Very early the next morning, I learned I was non-reactive to opioids, and was in so much pain I could not move at all.

In the aftermath of my surgery, I learned that EMTs are really, really nice, even when you need to call them twice within a twenty-four hour period.  I learned – very, very, very important – that I am either non-reactive or allergic to most opioids, or at least, the four they tried on me.  I learned that ERs and hospitals in general are absolutely awful, hellish places for people, but for autistic people in particular.  After my mom finally went home six hours into ER visit number 2 and it was clear I was being admitted, I learned that it is perfectly possible to be lying in an ER room and not get any help for hours.  Also, that if you can move, the nurses will think your pain is better.  (It isn’t, I just really, really, really had to pee and nobody answered when I called for help repeatedly.)

I learned that I need to get that drug interaction into my chart ASAP because when you have a 103 degree fever and are hallucinating that you are on a boat people will not take you seriously when you say, “you know I think I’m allergic to that? It gave me this rash, earlier?”

I learned that there was absolutely no boat ride involved in my hospital stay, but I still hate boats.  (I hated boats before, though.  I knew that.)

I learned that if you can physically show signs of distress, by crying or contorting your face, people will take your pain more seriously.

I learned that I can survive enormous amounts of pain, and that the sooner you can leave the hospital, the better.  Also quite a lot about self-advocacy and care plans and how hospitals work, both little details like food and big details like I’m allergic to this thing, what do you do. I’m trying to impart this knowledge to medical professionals now through various measures, and in the meantime, life goes on, winter goes on, I keep learning.

We had a snowstorm.  It was cold.  I learned not to trust the guy down the street to jump your car for $20 because he might cross the wires and cause over $200 in damage to the steering controls.

I’ve been going to church, even though we have an interim minister I am not too fond of.  And I am learning that churches just don’t function so well under interim ministers.  I am learning to wait for the new minister.  This is a true lesson in patience. With interim ministers, things don’t get done.  Issues aren’t resolved.  Things happen, and I know for a fact that they won’t get dealt with, and there is nothing I can do about it. 

I was sitting in a meeting after church, trying to learn about an important social and political issue.  There were perhaps twenty or twenty five people listening to a speaker, most of whom I knew, many of whom I’ve known for years.  The speaker was very academic and spoke very fast.  I was trying my hardest to follow, and to keep my body still despite the flickering lightbulb above and the uncomfortable chair and I was eighteen days out from my back surgery. I guess two or three questions/comments weren’t acceptable to Kathy, (sitting next to me) because she stuck her arm out, across my chest, in the universal ‘shut up’ gesture and said, ‘shhhhhh!’

Like I was a baby.  Or an errant three year old.  Or a dog.  Shhhhhh.

I lasted maybe another minute or two before I fled and melted in a corridor and I learned, yet again, that PTSD fucking sucks. Because here’s the thing about PTSD: when Kathy ‘shhhhh’d’ me, my brain was in first and second and third grade, having so much to say but having the words come out all wrong.  My body was transported back to a summer camp I attended at thirteen, and hearing someone say, ‘I wish someone would tape Ekie’s mouth shut’.  I was once again the only college freshman actually excited to learn about something and eager to have political discussions in intro to poli sci.  I was sitting in the office of a faculty member at my fellowship last year, hearing her ask me, ‘Could you maybe try counting to thirty before you say anything’.

I learned that as I deal with trauma in my body, my mind is more susceptible to outside trauma.  I learned that when I am having a meltdown I am in absolutely no position to deal with an apology from the person who caused it. The only thing I can do after a meltdown is collapse while all of my past selves come slowly back from green college campuses and stuffy boardrooms and classrooms with cork-board walls, to coalesce into the functioning adult I spend my days pretending that I am.

I learned that I may qualify for a type of government benefit, but due to my learning disabilities I have a very hard time filling out the form. I spent a full hour on hold with the agency until they asked me did I want to take a survey about how satisfied I was with the service I received.  I never received any service. I called back later. I spent another full hour on hold before a computer informs me that the line is too long and I should call back…..later.  I tried calling again, and learned that sometimes if you transpose two numbers of a government phone number you end up on a phone sex line.

All I need is help filling out one form. 

It isn’t fair.

It shouldn’t be this hard.

But I am learning that it is, and it always will be.

And if it is this hard for me, a relatively privileged cis white woman raised upper-middle-class, how much harder is it for people who do not have my privileges?  I did not fear calling the EMTs, even though they were accompanied by police officers.  I had the safety net of my state and federal Medicaid to pay for the operation and all the medications.  I had a relative’s home I could recuperate at.  I have resources to access more healthcare as I continue to deal with the never-ending, energy-sucking, soul-sapping pain.

I acknowledge all these privileges, and I acknowledge that due to my sensory and health issues, I have not gone to a single rally or protest and it is quite likely I never will.  Because even as I deal with my own small issues, at large, the country is in a constant state of implosion.  I honestly have no idea if the United States will even exist as we know it a year from now, or if it will further descend into fascism and anarchy, with the top-level government filled with people who don’t ‘believe’ in such basic facts as global warming, vaccines, or, you know, human rights.

I know so many amazing, kind, beautiful kids who are so full of potential it bursts out of them, and I am growing more convinced by the day that many of them will not live to grow up, or that the world they inhabit will be so drastically different from mine that it will be unrecognizable.  This planet is all we humans have got, and we humans are making it uninhabitable for life.  All life, not just ours.

I am learning to live with this fear and anxiety.  I am learning to take it day by day just as I always have.  I am learning – I continue to learn – to set boundaries, to know and listen to my own body, to seek out people who get it, to do what I can, where I can, when I can.  And if that means that social and political activism needs to take a back seat for a while so I can deal with my body, then I must learn to accept that as well.

It is all I can do.

It is all anyone can do.

We can only keep learning.